Ownership of biomedical information in biobanks

Comparative Issues in the Governance of Research Biobanks: Property, Privacy, Intellectual Property, and the Role of Technology

Volumn , Issue , 2012, Pages 77-86

  Hawkins, Naomi ^a   Kanellopoulou, Nadja ^b   Kaye, Jane ^b   Melham, Karen ^b,c   Boddington, Paula ^b   Curren, Liam ^b   Gowans, Heather ^b  

^a UNIVERSITY OF EXETER   (United Kingdom)

^b UNIVERSITY OF OXFORD   (United Kingdom)

^c NIHR OXFORD BIOMEDICAL RESEARCH CENTRE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84930243886     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1007/978-3-642-33116-9_5     Document Type: Chapter

References (20)

1. Bridge MG (2002) Personal property law, 3rd edn. Oxford University Press, Oxford
2. Cadigan RJ et al (2011) That's a good question: University researchers' views on ownership and retention of human genetic specimens. Genet Med 13: 569-575
3. Capron AM et al (2009) Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. Kennedy Inst Ethics J 19: 101-124
4. Curren L (2010) Ownership of personal information-A practical legal fallacy? Submission to Westminster Legal Policy Forum and Westminster eForum Keynote Seminar on Surveillance and Data Protection: Use and Effectiveness
5. D'Agostino G et al (2008) On the importance of intellectual property rights for e-science and the integrated health record. Health Informatics J 14: 95-111
6. Dickenson D (2008) Body shopping: The economy fuelled by flesh and blood. Oneworld Publications, Oxford
7. Hardcastle RJ (2009) Law and the human body: property rights, ownership and control. Hart, Oxford
8. Harmon A (2010) Indian tribe wins fight to limit research of its DNA. New York Times, 21 April 2010. http://www.nytimes.com/2010/04/22/us/22dna.html?ref=us. Accessed 21 May 2010
9. Janger EJ (2005) Genetic information, privacy and insolvency. J Law Med Ethics 33: 79-88
10. Kanellopoulou N (2009) Advocacy groups are research organisations: novel approaches in research governance. In: Lyall C, Papaioannou T, Smith J (eds) The limits to governance. Ashgate, Farnham, pp 193-215
11. Kaye J, Heeney C, Hawkins N, de Vries J, Boddington P (2009) Data sharing in genomics-re-shaping scientific practice. Nat Rev Genet 10: 331-335
12. Lemke AA, Wolf WA, Hebert-Beirne J, Smitha ME (2010) Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 13: 368-377
13. Maschke KJ (2005) Navigating an ethical patchwork-human gene banks. Nat Biotechnol 23: 539-545
14. Milanovic F, Pontille D, Cambon-Thomsen A (2007) Biobanking and data sharing: A plurality of exchange regimes. Genomics Soc Policy 3: 17-30
15. Palmer NE, McKendrick E (1998) Interests in goods, 2nd edn. LLP, London
16. Stanley P (2008) The law of confidentiality: A restatement. Hart Publishing, Oxford
17. Stuckey J (1981) The equitable action for breach of confidence: is information ever property? Sydney Law Rev 9: 402-443
18. Terry SF, Terry PF, Rauen KA, Uitto J, Bercovitch LG (2007) Advocacy groups as research organizations: The PXE International example. Nat Rev Genet 8: 157-164
19. Whitley EA, Kanellopoulou N, Kaye J (2012) Consent and research governance in biobanks: evidence from focus groups with medical researchers. Public Health Genomics 15(5): 232-242
20. Winickoff DE, Winickoff RN (2003) The Charitable trust as a model for genomic biobanks. N Engl J Med 349: 1180-1184